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Neuropathy Support Formula Effective?

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Unread 11-13-2010, 07:44 PM   #1
Emmys_Mom
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Default Neuropathy Support Formula Effective?

Hello, my father (78) was receiving Chemotherapy injections for the treatment of his prostate cancer. Over the last 2.5 months he motor skills have plummeted. The neurologist believes it is CIPN. It is so scary, he has gone from fully functioning to completely unable to walk in such a short time. I am desperate right now because he is suddenly unable to live on his own. I have found a B-1, B-12 & Alpha-lipoic Acid supplement named "Neuropathy Support Formula" with references to dramatic improvements in the PN. Has anyone had any successes with this or tried this with no improvement? Any insight would be greatly appreciated!
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Unread 11-14-2010, 06:56 AM   #2
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I am having a problem accessing the ingredients' details on the web.

Can you put the amounts listed on your bottle up here, including the type of B12 (is it methyl version?).

The studies on chemo induced neuropathy, used acetyl carnitine to help prevent the damage during the chemo and after:

This thread on PN explains the supplements, their dosages and when to take them, including the carnitine.

He should get testing for B12 and Vit D (often very low in seniors) as well.
http://neurotalk.psychcentral.com/thread121683.html
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Unread 11-14-2010, 05:17 PM   #3
Emmys_Mom
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Hi Mrs. D -
The nutritional info is for 2 capsules:
Vitamin B1 (Benfotiamine) 300mg
Vitamin B2 (Riboflavin) 4mg
Vitamin B6 (Pyridoxine HCl) 4mg
Vitamin B12 (Methylcobatamin) 2000mcg
Alpha Lipoic Acid 300mg
Vitamin D (Cholecalciferol) 500IU
Directions state to take 2 capsules twice daily.

My Dad did have his B12 tested but the doctor said it was well within normal range...not certain what it was though. I ordered the vitamins last night and will start him on them as soon as i receive - the way i see it, it can't get much worse. I may also try giving him the Acetyl L Carnitine supplement as well.
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Unread 11-14-2010, 05:52 PM   #4
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Quote:
Originally Posted by Emmys_Mom View Post
Hi Mrs. D -
The nutritional info is for 2 capsules:
Vitamin B1 (Benfotiamine) 300mg
Vitamin B2 (Riboflavin) 4mg
Vitamin B6 (Pyridoxine HCl) 4mg
Vitamin B12 (Methylcobatamin) 2000mcg
Alpha Lipoic Acid 300mg
Vitamin D (Cholecalciferol) 500IU
Directions state to take 2 capsules twice daily.

My Dad did have his B12 tested but the doctor said it was well within normal range...not certain what it was though. I ordered the vitamins last night and will start him on them as soon as i receive - the way i see it, it can't get much worse. I may also try giving him the Acetyl L Carnitine supplement as well.
This one is quite new. And surprisingly is very strong. Typically I don't like mixtures, because they often have a ratio that is not really useful.

I would expect this to be very expensive. Was it? If not, then I would wonder if it contains what it says it does! You can send me a PM and tell me if you don't want to post here. I am guessing about $60/month?

It also should be taken on an empty stomach, because of the B12 content. Do the directions say that? If not, that omission is important. So follow the empty stomach recommendation I give for best absorption of the B12.

The D is low, but in a mixture, I wouldn't expect it to be higher.
He may need much more than these provide. But you will have to have testing to show that.
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Unread 11-14-2010, 08:58 PM   #5
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Quote:
Originally Posted by mrsD View Post
This one is quite new. And surprisingly is very strong. Typically I don't like mixtures, because they often have a ratio that is not really useful.

I would expect this to be very expensive. Was it? If not, then I would wonder if it contains what it says it does! You can send me a PM and tell me if you don't want to post here. I am guessing about $60/month?

It also should be taken on an empty stomach, because of the B12 content. Do the directions say that? If not, that omission is important. So follow the empty stomach recommendation I give for best absorption of the B12.

The D is low, but in a mixture, I wouldn't expect it to be higher.
He may need much more than these provide. But you will have to have testing to show that.
Yes, you are very close - it was $63 for a one month supply but like i said i am willing to try anything at this point and if it works, will be much less than the home care that i would need to get for him. As an aside, the price can go as low as $43 but you need to commit to a long term supply...
And yes, it does say that it should be taken on an empty stomach once in the am and once in the pm. You stated that you don't think the "ratio" supplements are useful - it that because they don't contain enough of a certain vitamin? Also, do you think it would be helpful to supplement with the Acetyl L Carnitine? Like I said, I am totally new to all of this and it is absolutely killing me to see my Dad in this condition. I suppose we are lucky that he does not have any pain like many of the posters on this board - his is purely extreme numbness and no balance which has left him pretty much immobile.
Thank you so much for all of your feedback, it is very much appreciated!
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Unread 11-14-2010, 09:17 PM   #6
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This is the first mixed product with doses that appear useful.

Usually the mixed things are high in one thing and low in others, or vice versa.

Yes, most definitely do the acetyl carnitine. Start at 250mg a day for week, if that goes well, with no side effects, increase by 250mg daily for a week until at least 1000mg a day in divided doses.

Carnitine improves mitochondrial functions which can be damaged by chemo.

The elderly should be taking B12 daily anyway... not just for PN.

Some people complain of stomach upset from alpha lipoic acid.
This may become a problem, because taking with food helps. And with that B12 in there, you can't take with food. This is the downside to mixed products. If you take them separately you would pay a similar price but could taylor some dosing if needed.

But not everyone has stomach upset with the alpha lipoic. You'll just have to wait and see. Don't tell him, or the placebo thing will kick in and he may over respond, etc. If you have to take with food, you might have to buy extra methyl B12 and take separately.
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Unread 11-14-2010, 10:08 PM   #7
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mrs D - thank you SO MUCH for your input and recommendations. I will definately take your advice and keep you posted on progress!!
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Unread 12-17-2011, 05:43 PM   #8
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Quote:
Originally Posted by Emmys_Mom View Post
mrs D - thank you SO MUCH for your input and recommendations. I will definately take your advice and keep you posted on progress!!
Did the Neuropathy Support Formula help? I am looking at it for my MMN (anything that will help motor nerves regenerate!) but the neuropathytreatmentgroup.com web site makes it look like snake oil. I am encouraged that Mrs. D liked the combination of ingredients. Mrs. D, you might find the clinical study abstracts cited by the manufacturer interesting; they're at http://neuropathytreatmentgroup.com/...inical-studies (click on the "show" buttons to reveal details.) Most of them have to do with mega-dosing with the 3 main ingredients: their particular kind of B1 (benfotiamine), methylcobalamin (B12), and alpha-lipoic acid; most of those studies were done in the mid-90s on rats and mice.

I know the ingredients are good for nerves, now it just remains to be seen if the actual product is as it claims. That's what brought me here.
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Unread 12-18-2011, 08:22 AM   #9
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Since this thread started, we have learned that lipoic acid is best absorbed in another form, called stabilized. This is a form that is highly water soluble and therefore, less is needed per dose,
and it is far more effective.

This formula does not give this ingredient as "stabilized".
So expecting a huge response from that one is not likely.

Some people need more of one thing than another. Some people may react negatively to one thing in a mixture like that and then have to stop the whole thing, thereby losing any benefits from the other ingredients.

In pharmacy we call this "shot gun" therapy. It may work, or it may partially work, or it may have to be stopped for some reason.

For example, I react to high dose lipoic acid... so I have to keep it at 100mg a day. At that dose using stabilized, I do get response, and had some good HbA1C results this last testing time. So that is just one example.

It can be difficult figuring out what is going on with PN however, and so we then see all sorts of "remedies" posted on our forum as a result.

I personally think people with Chemo damage, need different things than those with nutritional deficiencies, or autoimmune damage.

I tend to like to buy my supplements separately, and I choose quality manufacturing places with a good history of care and accuracy. When a new thing comes out we often don't know much about who makes it, for example. So there are many reasons to be careful. But being careful does not mean throwing away potential.
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Unread 12-18-2011, 11:37 AM   #10
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Quote:
Originally Posted by mrsD View Post
I personally think people with Chemo damage, need different things than those with nutritional deficiencies, or autoimmune damage.
Is there a thread addressing autoimmune damage specifically?

Thanks!
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